Il Dopo di Noi: nuove alleanze tra pedagogia speciale ed economia per nuovi spazi di Qualità di Vita

Abstract

Il contributo esplora le dimensioni esistenziali ed economiche del Dopo di Noi. Gli autori, in particolare, approfondiscono le sfide che una famiglia, in cui i membri economicamente rilevanti sono in età senile, si trova ad affrontare: da un lato, le preoccupazioni per il futuro di un figlio adulto con disabilità, dall'altro, un Welfare State moderno che introduce un cambio di paradigma nella produzione e/o finanziamento dell’assistenza sociale alle persone con disabilità, anche complesse. Se, in termini economici, il Dopo di Noi rappresenta una soluzione al fallimento o insufficienze del mercato, in termini pedagogici, questo si crea nel Durante Noi e richiede nuove azioni mirate al progetto di vita della persona con disabilità. Ripercorrendo gli assetti epistemologici della pedagogia speciale e dell'economia, l'articolo argomenterà diverse piste al fine di ricreare un nuovo legame generativo e trasformativo in grado di rispondere al Dopo di Noi con azioni mirate di progettazione di spazi di Qualità di Vita per i caregivers e per gli adulti con disabilità.

Families with young people with profound intellecrual and multiple disabilities: crisis or rebirth?

“…The pandemic has had a significant psychological impact on all of us (Biffi & Galimberti, 2021;Bocci, 2021;Brook et al, 2020;Di Giandomenico, Marchetti, Fontanesi & Verrocchio, 2020) and as we have demonstrated in our previous research (Giaconi, Socci, Fidanza, Del Bianco, D'Angelo & Capellini, 2020;Giaconi, Del Bianco, Socci, Severini & D'Angelo, 2021) even more for people who already presented states of illness or disability and for their families, the impact was not only pedagogical but also due to the lack of a series of services and supports that had to guarantee the rights of care and protection (Giaconi et al, 2020;. Even under the best of circumstances, caregiving can be challenging.…”

“…In conclusion, the studies reported in this section show how the life cycle of a family with children with PIMD is full of delicate and sensitive phases both from a pedagogical and economic point of view (Giaconi et al, 2020;, even more so it is state in the period of the pandemic and post-pandemic. This period also showed, as will be specified in the next paragraph, how the family itself has been a resource for the community, addressing the challenges of daily care and care for their children.…”

“…These investigations allow to shed light on the pedagogical criticalities before Covid-19 and during the pandemic as they have significantly impacted the daily life of people with disabilities and their families, marked by the closure of social and health services and the interruption of home care (Phillips et al, 2020). Therefore, the pandemic and the transformations of contexts and relationships have had a significant impact on the perception of the Quality of Life of people with disabilities and families themselves, especially caregivers (D'Angelo, 2020;Giaconi et al, 2020Giaconi et al, , 2021. Criticalities emerge especially in the management of the daily routine of people with intellectual disabilities (Hassiotis et al, 2020;Courtenay, Perera, 2020;Phillips et al, 2020) or with Autism Spectrum Disorders (Colizzi, Sironi, Antonini, Ciceri, Bovo & Zoccante, 2020;Lee et al, 2020;Eshraghi et al, 2020) highlighting a strong impact on the stress levels of family caregivers, compared to family members who have other disabilities (Narzisi, 2020).…”

“…From the reconstruction of literature (D'Angelo, 2020;Giaconi, 2015;Giaconi et al, 2020;Greenberg et al, 2020;Prasad et al, 2020;Vaitheswaran, Lakshminarayanan, Ramanujam, Sargunan & Venkatesan, 2020), the impact of caregiving stress on caregiver mental and physical health can be considered a strict emergency because it is grafted onto an already present critical condition. Social-distancing efforts and fears for Covid-19 infections increase the levels of caregiver stress, asking to formulate new answers to their need for support, requiring them a different and new type of commitment both in time and skills terms.…”

“…In brief, family or informal caregivers are considered essential support for people with disabilities, addictions, mental health, and chronic diseases, so much so that they are key figures of European and Italian social welfare care (Giaconi et al, 2020;Greenberg et al, 2020). They are called to demanding tasks and the Covid-19 pandemic amplifies the daily challenges caregivers face.…”